2013 Joint Summits Late Breaker Panels

TBI Late Breaking Sessions

Monday, March 18
3:30 p.m.-5:00 p.m. Room: Cyril Magnin I

TBI-LB01: Late Breaking Session - Data Integration for Disease Reclassification

Network-based Stratification of Tumor Mutations
M. Hofree, J. Shen, T. Ideker, University of California San Diego

Network Models of GWAS Uncover the Topological Centrality of Protein Interactions in Complex Disease Traits
Y. Lee, J. Li, E. Rebman, K. Regan, E. Gamazon, J. Chen, X. Yang, N. Cox, Y. Lussier, The University of Chicago

Integration of Multi-layers of Genomic Data for Cancer Clinical Outcome Prediction
D. Kim, H. Shin, Y. Song, J. Kim, Seoul National University

Phenome-wide Analysis of GWAS-discovered Genetic Associations
J. Denny, Vanderbilt University

Tuesday, March 19
8:30 a.m.-10:00 a.m. Room: Cyril Magnin I

TBI-LB02: Late Breaking Session - Genomic Medicine

CAGI: The Critical Assessment of Genome Interpretation, a Community Experiment to Evaluate Phenotype Prediction
S. Brenner, University of California Berkley; S. Repo, EMBL-EMBI; J. Moult, University of Maryland

Collective Computational Wisdom to Predict Disease-associated SNPs
E. Capriotti, University of Alabama at Birmingham; R. Altman, Stanford University; Y. Bromberg, Rutgers University

Thoughts from SNP-SIG: Future Challenges in the Annotation of Genetic Variations
Y. Bromberg, Rutgers University; E. Capriotti, University of Alabama at Birmingham

Precision Medicine through Finding the True Names of Disease
I. Kohane, Harvard Medical School

Tuesday, March 19
1:30 p.m.-3:00 p.m. Room: Cyril Magnin I

TBI-LB03: Late Breaking Session - That's My Data! Navigating Ownership, Sharing, and Translation in the Genomic Era

Panelists:
Kelly Edwards, University of Washington; Hank Greely, Stanford University; Barbara Koenig, University of California at San Francisco; Andrew Torrance, University of Kansas

In this era of big data, genomic medicine is enabling personalized approaches to diagnostics and therapeutics in ways never before possible. But with these advances come critical ethical, legal, and social issues around data use. Who owns this data and the new knowledge to which it gives rise? What obligations do researchers have toward participants? What information should researchers be sharing with patients, participants, and society more broadly? Are there novel models of partnership and engagement that can build trust? Where does nature end and intellectual property begin? How are parallel efforts on the consumer market disrupting usual clinical care? These questions must be addressed by researchers and society alike if we are to harness the power of genomic and large-scale clinical data capabilities in ways that are trustworthy and impactful.

In this panel, legal, social, and ethics scholars will speak to issues of data sharing, community engagement, returning results, gene patenting and ownership, and direct-to-consumer movements. Each member of the panel consults actively on large-scale data-driven research projects and is at the front lines of shaping governance processes that will facilitate, rather than hinder, our ability to utilize big data to impact health.

In order for the best technology and science in the world to come to bear on human health issues, partners across clinical groups, researchers, policymakers, and society at large must be engaged. This panel discussion will frame emerging issues in the field with researchers and advance further stakeholder engagement.

CRI Late Breaking Session

Thursday, March 21
10:30 a.m. – 12:00 p.m. Room: TBA

CRI-LB01 Panel: Sustaining the Digital Research Enterprise

E. Berner, University of Alabama, Birmingham; R. Zottola, University of Massachusetts; W. Barnett, Indiana University; R. Waitman, KU Medical Center; R. Riley, Association of Academic Health Sciences Libraries

In October 2011, the Association of American Medical Colleges (AAMC) along with the Association of Academic Health Sciences Libraries (AAHSL) and the National Library of Medicine (NLM) hosted the Sustaining the Digital Research Enterprise Summit to identify infrastructures and strategies needed to support the digital research enterprise today and into the future. A task force was created from this summit to address four priority needs:

• Mechanisms to identify and share standards for data management and governance
• Practices for designing and developing new infrastructures at scale
• Strategies and resources to cultivate a digitally literate workforce
• Approaches for national, state, and local advocacy to inform policy and funding

Working with its members and partner organizations the AAMC will create and maintain a stakeholder network to assist member organizations with planning, implementing, managing and sustaining the digital research enterprise. Digital resources are a key area of growth and expense for academic health centers in the next decade, and proactive planning is critical. Services provided through this network will include operational benchmarks, progression growth models, policy and governance resources. The network will also facilitate adoption and development of data standards and ontologies through communities of practice. Following presentations, the panel seeks the audience's participation regarding how our community can address these challenges. No single institution has the capacity to solve this problem alone, but as a community of professionals motivated by mutual self-interest, we collectively have the potential to move research, education, and care forward through the digital deluge.